Masterpost Blues

I’ve been trying to come up with some kind of “SPD masterpost” series since I started group therapy a few weeks ago (and individual therapy last week). It’s really interesting, and I’ve learned a lot about the current research going on for SPD. They always give us handouts, and we usually do some kind of activity as well. I think the information is really good and I want to try and bring that to people.

But when it comes to putting the actual post together…maybe I’m just not a “masterpost” kind of writer. Or maybe the words just haven’t come to me yet.

Honestly the things that keep coming to me are some serious doubts about how effective the occupational therapy will be. This isn’t because the therapist isn’t skilled, it’s more because I’m afraid that treatment doesn’t yet exist for my most pressing symptoms: hypersensitivity to noise and smells. Sure, I can cut through the sensory input to complete a task for a test or during a session, but in real life? When I walk past someone at the store with too much perfume, or when something gets dropped on a hard floor, what is there to help with that? My threshold for these things is much lower than the general population, and from what I’m reading about other adults, this is nearly impossible to change. Most of the therapy so far has focused on knowing how to recognize when my body is reaching its limits, which is very valuable, and I’m getting much better at it.

Well, at least she had a good suggestion last week: Do some job shadowing while I’m in limbo. Not so much for the “what” and “why” as much as the sensory needs. I can be happy doing almost any type of work, because I find so many different things interesting and I can figure most things out with proper training and guidance. Finding purpose is not difficult for me either, it comes down to a combination of being interested in the work and valued by the organization. However, the only way to know if the sensory needs will align with mine is through some real-life experience. Every work environment is so specific, even within a particular field. I need to find people I know that have worked in a variety of different places, so that I can get as much information as possible. It’s likely that whatever I choose will require more schooling, so I’d like to get an idea if it will actually work for me before I take the plunge and spend all that time and money.

Things are still hard, I’m still struggling physically with back pain and some hand issues, but both are getting better. Only thing to do is keep moving forward, even though I just feel like I’m spinning in circles the whole time.

 

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Masterpost Blues

Names Are Hard

I struggle with coming up with names for things. Over the years, I’ve found that if I just give it some time the right thing will often come to me, usually in a blaze of “AHA!” and then scrambling to find a pen and paper to write it down before I forget.

This blog was no different. I knew after reading several blogs by other autistic and disabled adults that I wanted to start my own, but I was utterly stuck on a name. Everyone else has these cool, quirky, creative names and I was shooting blanks.

Last February, I was officially diagnosed with Autism Spectrum Disorder. Things have been…a bit of a dumpster fire since then. Not because of the diagnosis so much as a cascading series of inevitable events that have happened at THE WORST possible time. Damn you, Murphy!

This Friday, I go in to the STAR Institute here in Denver for my evaluation for Sensory Processing Disorder (SPD). This has turned out to be the most troubling part of ASD for me recently. I’m hoping that the occupational therapists there can help me find some coping strategies, because shit has gotten incredibly real this year, you guys. In addition, I finally found a psychologist (who works with STAR) that I finally feel “gets” me. Umpteenth time’s the charm, right? As she put it, the occupational therapists at STAR will help me with more functional, daily living aspects of SPD, while she will help with the emotional and behavioral issues that tend to go hand-in-hand with it. She’s not fully on board with the ASD diagnosis, but in a way I think this may prove better in the long run, because she’s already seen the invisible struggles I’ve been having. She suspects that I’m “twice-gifted” with  some undiagnosed learning disabilities, specifically praxis issues (trouble with sequencing events, motor skills, etc.), possibly ADD, and possibly some non-verbal learning disabilities (she hasn’t been specific on those yet). I also suspect a form of Central Auditory Processing Disorder (CAPD), but I haven’t brought that up yet.

All of this is in addition to some physical and occupational therapy I’m already in due to various other medical issues that have just become too much to deal with.

Do I consider myself disabled? At this point, yes, though you won’t hear me say it to most people. All of my disabilities are invisible, and I just don’t feel like explaining how fully emotionally draining it is to be putting in so much effort just to function like normal. How why my 3 hand surgeries in the past 3 years have been difficult to deal with because I have to put in small amounts of effort constantly to re-think how to do things that were once instinctual. How I don’t go to the movies, live concerts, local attractions, or even sometimes friend’s houses much anymore because I have to weigh whether or not the sensory load will be too much. How I used to feel confident in putting “learns new skills quickly” on my resume, but no longer feel that that’s truthful, and now I feel there’s a monstrous hole in my skill set that I don’t know how to fill. What kind of work am I even qualified for? How do I find a job that doesn’t set off my sensory triggers so much when all of my job experience has been just that? Can I even work with all the appointments I have to schedule and go to in the coming months? There’s kind of a limit to how flexible and employer is willing to be, especially with new employees. Is there a part-time job that will even look at my resume without immediately deciding I’m over-qualified?

You’re starting to see my dilemma.

This will be a place for me to document my process, a resource for others in similar situations, and another voice in the growing community of invisible disability.

So, how do I come up with a name for that?

 

Deep breath, just open up a Word document and write what’s on your mind for now. It doesn’t even have to make sense, you’re not publishing anything yet. The name will come in time.

One of the first autistic blog articles I read was Cynthia Kim’s When Being a Good Girl is Bad for You. It was like she was in my head, narrating a movie of my childhood. I immediately began to read more of her articles in a binge session. Some of them resonated just as strongly with me; others not so much. There was a hint of myself in all of them however, and I continued my search for more.

I can’t remember exactly what I was doing when it came to me, but I had the good fortune of being at home and could easily write it down: In Plain Sight. I scribbled it in big, uneven letters and circled it several times before setting it in front of the computer. What I couldn’t pin down was an exact explanation as to why I had chosen it. It was more of a feeling than anything else, and like a typical autistic I have trouble putting feelings into words. I loved the sound of it, but I couldn’t put my finger on why.

A month or so later, I was perseverating on Musings of an Aspie once again and I came across a paragraph from this article:

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.

Bam. There it was, the words that I had been unable to form with my flash of insight. As a child with likely undiagnosed disabilities, as an adult with invisible disabilities, I have been subtly learning to hide my quirks and stims and blend in to normal society. To pass as neurotypical. A year and a half ago I had never heard of two of those terms in that last sentence. Now I’m slowly opening my eyes to all the ways that I have squashed and squeezed myself into this mold that I’ve constructed from arbitrary societal expectations and norms. That mold is still there, and I still sometimes try to cram myself into it despite all the self-discovery that has happened for me recently.

The difference is, now I get to choose to smash it to bits.

So, here’s to all of us that have broken our chains and revealed our true selves from behind our masks. Here’s to the shy weirdos that have learned the rules and chosen which ones to reject and which ones to keep. Here’s to us with invisible disabilities that choose to smash stigmas. Here’s to us that are living life on our terms, not on someone else’s. Here’s to the mothers and mentors that have helped us along the way.

And most importantly, here’s to those that are still forced to hide in plain sight. I’m still right there with you at times. This will always be a safe place for you, and I look forward to walking this journey together.

Names Are Hard